Recommend a health care provider

IACFS/ME Primer - 2014 Edition

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Possible new approaches

Dr. Richie Shoemaker feels that these illnesses are triggered by neurotoxins. He has developed a simple internet-based test called the visual contrast sensitivity test (VCS).

Because the optic nerve is very sensitive to the effects of neurotoxins, he uses the VCS to detect the presence of a neurotoxin. If the test is positive, he recommends treatment with cholestyramine, an older powdered medication that was used to treat high cholesterol. He contends that the powder binds to and excretes neurotoxins, reducing symptoms. You take the medication 4x/da for 2-3 weeks. [We are dubious about this test and treatment.—Ed.]

Another approach from Dr. Shoemaker is to treat with Actos (pioglitazone), a medication currently used to treat diabetes. The medication blocks tumor necrosis factor (TNF). By blocking TNF, you may reduce the severity of symptoms. Dr. Hubbuch has just started her first patient on this. She'll keep us posted on her progress.

One caution, the drug is designed to lower blood sugar, so this needs to be closely monitored.

[Actos is the subject of a 2015 lawsuit for causing bladder cancer.—Ed.]

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.